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Comprehensive Handbook of Childhood Cancer and Sickle Cell DiseaseA Biopsychosocial Approach$
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Ronald T. Brown

Print publication date: 2006

Print ISBN-13: 9780195169850

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780195169850.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 19 June 2021

Family Systems Issues in Pediatric Sickle Cell Disease

Family Systems Issues in Pediatric Sickle Cell Disease

(p.496) 26 Family Systems Issues in Pediatric Sickle Cell Disease
Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease

Lamia P. Barakat

Rhonda C. Boyd

Oxford University Press

Because sickle cell disease (SCD) largely affects individuals of African descent, throughout this chapter the importance of a culturally sensitive and competent family systems approach to understanding family issues in SCD is advocated. After African American families are described in some depth, including their strengths, unique features, and special concerns, frameworks for understanding how SCD may have an impact on family functioning are presented with emphasis on the developmental-ecological model of family functioning (Kazak, 1989). This model is used to characterize family systems issues associated with SCD, and specific elements are examined. Developmental changes in family adaptation over the course of the illness are considered, as are efforts to intervene in family adaptation. Broad sociocultural systems issues with an impact on families of African descent are described, and the need for culturally sensitive and respectful approaches to families affected by SCD is underscored. Finally, unexamined areas in family systems issues for pediatric SCD are considered, with suggestions for further research. Understanding family systems issues in pediatric SCD is critical to providing effective care and to facilitating optimal adaptation in the context of the disease and its treatment. A discussion of family issues pertinent to SCD must start by acknowledging that sociocultural factors, including race, ethnicity, and culture, are central because African Americans are the primary group diagnosed with SCD in the United States, and that family functioning is impacted by SCD and its treatment demands almost immediately following the birth of a child. There are a host of sociocultural factors that have an impact on African Americans that may increase resilience or risk to overall family adaptation to a child’s disease. Therefore, it is imperative to understand families of children with SCD in the context of the immediate conditions in which they live and the larger sociopolitical context in which they function (Johnson et al., 1995; Sterling, Peterson, & Weekes, 1997).

Keywords:   cultural beliefs about illness, exosystem, fathers, health care service utilization, mesosytem, racial socialization, social-ecological model

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